Zia is 27 years of age
Identical twin sisters, Zia and Cyanne Westerman, were less than two years old when they were diagnosed with a neuromuscular condition. It wasn’t until twenty years later when they found out the type of Muscular Dystrophy they have.
“I knew from the beginning that there was something,” says the twins’ mother, Jodie. “A week or so before the girls were two, we got the test results back. The GP wasn’t very clear but referred us to a paediatrician who was a bit more helpful. From there, it was weekly hospital visits. We didn’t have much of a life. We had to be at hospital every week and, eventually, we wanted to stop the tests and start living our lives.”
The family found out about MDSA through a referral by their doctor. Zia and her family have faced massive challenges living in Whyalla. When the twins were younger, they attended a number of events in Adelaide and enjoyed being a part of the community, but their mum would have liked to get the children to the MDSA events in Adelaide more often than was possible.
“As a single mum with two children with disabilities, it was very difficult for me to travel down to Adelaide,” says Jodie. “I wish that they had the resources to do more here in Whyalla; hopefully in the future they will be able to.”
MDSA works hard to increase the services available for those in rural South Australia and, with the funding generated from the My Dream Lottery, the organisation will be able provide more services to those in rural communities. In addition, local councils are also working to increase services and accessibility.
“There isn’t really much of a community for people with disabilities in Whyalla at the moment, but I’m working with the council to change that,” says Zia. “Access in Whyalla is getting a lot better; through my work with the council, I am able to give input around decisions from the perspective of someone with a disability. There is currently only one other person in Whyalla with a neuromuscular condition, and he is a small child that has just been diagnosed. For my mum, there was nobody to turn to. MDSA are able to put on movie days and camps in Adelaide for the big community there, but they don’t have the resources to do that rurally at the moment Having more of a community in Whyalla for people with disabilities would be wonderful, even just a gathering at a park.”
MDSA looks forward to being able to increase the services it provides to those in rural communities, which is why public support of its initiatives and donations are so integral for the organisation to continue to do what it does. Zia currently runs her own freelance editing business and has done so for the past three years since completing a writing course.